Wednesday, March 5, 2014

Today is an action day to end the use of the word "retarded" (and variations thereof) in all contexts. There seems to be two camps on this subject. Those that don't see the harm, and those that do. I fall into the latter camp.

And today, on this action day, I want to lay out the reasons WHY.

First, a little background. Ava has Angelman Syndrome. You likely know that. You also may know that part of Angelman Syndrome is a cognitive or intellectual disability. Although I am always quick to point out that, without adequate communication, we are not able to measure just how smart she is! But 50 years ago, Ava would have been classified as "mentally retarded." More background: Ava has been called "retarded" by another child before. And one more important piece of information: Ava can hear. Ava can understand. We take the "least dangerous approach" with her. Meaning we assume she understands everything any other typical 4 year old does. Because we honestly do not know.

Those that use the R-Word defend their use by saying that they don't call intellectually disabled people that word. They use it describing situations or as a way to express someone's ignorance. I understand that. I have also been told that I shouldn't be so sensitive to that word, and that they don't consider Ava to be "retarded." I also understand that. Our friends and family, those that know Ava, may not think of her in reference to that word, but many in the world do. And it is important understand that in order to understand my point of view.

My reason for not using the "R-Word", and for not allowing it to be used around my daughter, is a very simple one. If someone uses that word around Ava, regardless of subject matter, it is in a negative context. So Ava hears and associates that word with negativity. It is a bad word, a hateful word, a naughty word. Then she is at the park and another child (who has been taught the word) calls her "retarded" because she is different. And suddenly, my child- my beautiful, smart, funny, loving, happy, sassy, amazing child- associates herself with a word that is negative, bad, hateful, and naughty.

That is why I want to end the word. In all uses. In all contexts.

I know it is a common word. And if Ava isn't around, and it isn't in our home, I don't say anything to people who use it. As my mother constantly reminds me, I am not the world's police and I cannot right the wrongs of everyone. But I certainly do say something- politely but assertively- when Ava is there to hear. The bottom line is that it is about respect. Respect for a girl, and in fact a whole segment of the population, that is full of love, honesty, charity, and hope. A group of people so willing to forgive, a group of people who work harder and struggle more and yet smile more and love more. What is there not to respect?! Do not fear those who are different. Do not judge or make fun. Embrace and love and know that we are ALL made in HIS image.

So I issue you a challenge. The next time you hear yourself saying that word. Or thinking that word. STOP. And picture this sweet girl. And then ask yourself- "is that word really the appropriate word?"

Saturday, February 15, 2014

I have a four year old and fourteen month old post to write, but today I want to write about something of greater importance. Angelman Syndrome. Our (now) four year old Ava has AS, a rare neurogenetic disorder caused by a deletion or mutation of the ube3a gene on the 15th maternal chromosome.

Got that??? I didn't either at first. I still don't fully understand. Many physicians don't fully understand genetics. But the bottom line is a profound disability. I have been asked- mostly by people who have never met Ava in person- why a cure is so important? Don't we want to keep her the way God made her? Why would we want to change her? And it occurs to me that, if people ask and wonder those things, I am perhaps putting too happy a face on AS. So today I am going to be a little more real about Ava.

There are what some people call blessings in AS. I like to refer to them as mercies. Yes, Ava is happy. She has a beautiful smile and intoxicating laugh. She loves people- all people- and has never met a stranger. She teaches the world about love and acceptance and God's grace. But all of those mercies hide a dark and harsh reality.

Ava is nonverbal. Really nonverbal. As in unable to communicate. No sentences. No words. Just squeals and sounds. Take a moment to imagine your mind working fully but not being able to communicate in ANY WAY. How frustrating and sad and difficult that would be- for both you and those who care for you.

Ava has physical disabilities. Both gross and fine motor delays that are on the moderate to severe spectrum. She has a hard time walking, although we are thankful she is able to walk! She has an ataxic and jerky gate that results in many trips and stumbles. She is unable to walk long distances and will require a wheelchair in the future for certain outings and places. She cannot do most of the fine motor tasks that a child at the age of 18 months is able to do. Her brother is rapidly eclipsing her abilities- something that both breaks and swells my heart. She cannot point, she has difficulty with the "pincher" grasp. She cannot pick up small objects and even when she is able to pick up objects, she is unable to be precise about placing them where she would like them. She has a difficult time feeding herself. Although, like walking, we are so thankful she can feed herself as this is something not all "angels" can do. She has severe motor planning issues and getting her body to do what her mind intends is a major challenge for her.

Ava has difficulties eating and with oral motor planning. She has improved a great deal in this area, but still struggles swallowing liquids. She only recently started drinking from a straw cup, but still needs a sippy type cup, as her motor planning issues cause her to have a difficult time knowing how much pressure to put on things like a Styrofoam cup.

Ava has seizures. Complex Epilepsy to be specific. If you have ever been witness to an epileptic seizure, you know how very scary it is. When it is your child, it is truly terrifying. She is on two seizure medications to control these episodes, and thankfully they do a good job. But we still see "breakthrough seizures" when she is sick or during certain tasks, like bathing, eating, and waking up. Mostly these are myoclonic seizures. If she is going to have seizures, we want them to be myoclonics. Many other types of seizures could easily land us in the ER and many angels have passed away due to uncontrollable seizures. Just one of the ways this awful disorder can claim a life.

Ava has chronic ear infections. AS is known to cause a weakened pulmonary system. Ava doesn't seem to struggle with things like pneumonia like other angels do (Praise the Lord!), but she is chronically congested. This plus any cold she gets leads to a lot of fluid buildup and then ear infections. Because she cannot blow her noise (back to the inability to motor plan) every cold she gets turns into either ear or sinus infections. These lead to fever which leads to seizures. Everything is cyclical with Ava.

Ava has behavioral issues that are difficult to understand or address. Currently, she is in a "hair pulling" stage. Sometimes she remembers to and is able to be gentle, but most of the time she pulls! And it hurts! She also LOVES water, an especially concerning behavior because she also doesn't care to listen often. She tends to wonder and we have been working on her stopping when we ask her to stop. But she has a mind of her own and will go head first into any situation regardless of the danger- a large body of water, a busy street, a mound of fire ants, a vicious dog...the dangers are overwhelming to me.

She has severe sensory needs. She needs a lot of input from the world around her, and the result is mouthing of objects (so choking is a constant threat), head swinging, hanging upside down, spinning. Any and all activities that allow her to have sensory input, regardless of the dangers they may pose to her.

Cognition. Probably the hardest for me to talk about. Not only because it is emotional difficult, but because we simply do not know. Without the ability to communicate either verbally or by using alternative communication, we simply do not know what the cognitive delay is for Ava. IF there is one. It was first thought that angels were severely cognitively delayed. But as communication efforts have increased through things like communication apps, devices, and systems like PECS and PODD, we are learning that at least some angels are extremely bright. In fact, most of what I know about Ava has come from other angels, older than her, who are able to effectively communicate. They have taught us so much about the challenges and sadness of AS. I don't know what is going on in my daughter's head. She shows us her sass and personality on a daily basis, exhibits her intelligence and problem solving skills all the time. But I don't know what her favorite color is. I don't know if she likes her new shirt or if her shoes hurt her feet. I don't know if she hates what I feed her or if she would rather have chicken than turkey. I just don't know, and she cannot tell me. We are working on communication for Ava, but for now, her world is one of silence and mine is one of guesswork and hope.

Ava has eight prescription medications and three over the counter medications that she takes daily, most 2 times per day. And that is when she is totally "healthy."

So that is a snapshot of Ava. A snapshot of our lives. So I ask you... if this were your child, your life, would YOU want a cure?! Of course you would. So I ask you all to do me a favor. Today is International Angelman Syndrome Day. And I ask that you please post about Ava and Angelman Syndrome on your social media sites using the hashtag #cureangelman. We are desperately close to an effective treatment- basically a cure- that all that is standing in our way is funding. Please help us raise awareness and funds for our children. Help give Ava a voice.

Thursday, January 9, 2014

I have been writing more about Archer lately because of his monthly updates, and because most of my Ava posts I save for the Defying Disabilities monthly post that I write. But there are several things she has done the past several months that I want to remember.

She is really growing up and doing some fun things. I am always amazed at her! And honestly, I had an unpleasant encounter this week, and it made me realize just how sad some people are, and how privileged I am, to be her mom. And to understand the value of an individual who happens to have special needs.

Ava Moment 1: She was in her room, playing with her blinds. She KNOWS this is against the rules, and she knew she was doing something bad. I was busy at the moment, so I just yelled back to her, "Ava! Get out of your blinds!!!" A few seconds later, she slammed her bedroom door! And went right back to playing in the blinds!

Ava Moment 2: After breakfast, I sent her to her room while I followed after grabbing her clothes out of the laundry basket. When I got to her room, her closet was mostly closed but her little hand was holding the door. I said "Huh. I wonder where Ava went???" With that, she jumped out of her closet, laughed hysterically for a few seconds, then jumped back in!

Ava Moment 3: Tonight, I took the kids to see their grandpa who just had surgery. Cole was already there with his dad, and it isn't often that I attempt to load both kids at the same time. But it just worked out that way. She waited patiently by the garage door while I set the alarm, then she walked to her door all by herself and tried to open the door! I put her in but noticed that her shirt was wet. So I just sat her in her seat while I strapped her brother into his seat and grabbed a fresh shirt. I explained to her what I was doing, as I could see she was concerned that I wasn't going to buckle her in. But obviously, she wasn't happy with my decision because when I got back she had her seat belt straps over her shoulders!

Ava Moment 4: This is less a moment than a new skill. Since Thanksgiving, Ava has sat in a regular dining chair, without any adaptations! She is doing so well! And when finished, she gets up, goes into the living room, and closes the gate behind her!!!

Ava, mommy is so proud of you. And I am so encouraged reading about how close the researchers are to a cure. I cannot wait to hear your voice and have a conversation with you. That is my dream, my #1 on my bucket list. And I pray that it comes true, not just for me, but mostly for you!!!! I love you so very much. And I am blessed to call you my sweet daughter.

Saturday, January 4, 2014

Actually, Archer is closer to 13 months. But between work, the party and the holidays, I have not had time to sit and write this all down. And when I have had time, I haven't had the energy!

I will try to do a party post soon. But if you want to see some pictures, and are on instagram, you can search #archerisone ! Now, on to the stats!

As usual, some things are the same from previous months...

Weight

You are about 23 lbs. You are still really lean for your length! Not too many rolls on you!

Length

You are still TALL TALL TALL! You are almost as tall as your sister! It is so funny! You are about the height of a 15-18 month old I think. You are in the 95% for your age, and are often mistaken for being older.

Clothes

You wear all 18-24 months clothing! I finally cleaned out your closet, and did a little shopping for you. Hopefully we have what we need for winter!

Nicknames

Arch, Bub, Bubs, Bubba, Brother, Chubs, Chunky Monkey, BuddaBall, Chubbers, Archie-Boy (I am the only one who is allowed to call him that...he will NOT be called "Archie" if I can help it!)

I have heard several family members call him "Archie" lately...that must stop.

Food

You are now on organic whole milk, and love it! The transition was really easy for you. You love all sorts of food, and the more flavor something has, the better! You love to eat guacamole, lasagna, spaghetti, ravioli, all fruits, and many veggies! You are also a BIG fan of meat! Any meat we put in front of you, you gobble down! I am so glad you are a good eater!!!

Sleep

You pretty much go down at night without much fuss. You are taking two naps a day, and in general sleep really well. You very rarely get up at night. And honestly, it is about time! HA!

Words

Mama

Dada

Bye

Hi

Ava (he tries, but it comes out Awa)

Uh oh

Bite (comes out "bi bi")

Uh oh is your favorite word, and it is so funny when you say it! You have also started saying "mmmmm" when you are eating, and we are working on saying "woah!" I don't know why. I guess I think it would be cute!

Fun Stuff- some are the same from months 1-11!

* You smile and laugh a lot! Especially in the mornings! That seems to be your happiest time of the day, after you have had your "coffee" (aka milk).

* My prediction that you would be a full time walker by your 1st birthday was correct! You walk everywhere now, and are starting to try to run. You get better each day and we are now working on walking in shoes.

* You are so funny and have a great sense of humor! You love to laugh and play games!

* You play peek a boo, chase (with Wesley and Daddy mostly), and "monkey see, monkey do" (we do something, like stick our tongue out, then he does it) all the time.

* You love puzzles and books.

* You have finally decided that you love bathtime! And even enjoy it with sister in there with you! So we are back to double bathtime, and it is so fun! Messy, but fun! She loves to shampoo your hair for you, and you are such a sweet brother and let her!

*You are fascinated with hairbrushes! You love to carry them with you and you even try to brush mine and sister's hair! It is so sweet!

* You still love to be naked! You just smile and smile when you are stripped down! And you try to bolt from me when I am changing your diaper!

* You are pretty much only fussy when something is wrong or you are not getting your way, or you are tired. At least now we can identify WHY you are fussing. That makes things a lot better!

* You now have EIGHT teeth! 4 on top and 4 on bottom. You are working on your molars. They may be in but I am not brave enough to stick my fingers in your mouth.

* You are very tolerant of your sister, and have really started watching and smiling at her. I think the two of you are going to be very close! Although you do love to pull her hair!!! Y'all have started interacting more and more, and it melts my heart to watch!

* You still prefer mommy, but are starting to really like that daddy guy, too!

* You give kisses and blow kisses on a regular basis. And you are a BIG flirt!!!

* You are very shy around new people, but warm up fast, especially if it is a pretty girl! You love to wave and will just keep waving at someone.

* You still love to clap and you have even taught your sister how to clap again! She had lost that skill but has picked it back up from you! You are such a good brother!

* You have now started doing more with your right hand. So I don't know how your handedness will go? Time will tell! I don't care either way, but it is fun to watch you develop preferences.

* You still LOVE Billy, and he loves you! He doesn't like it when you cry at night, and he will get mommy up to see about you every time!

* You climb on everything now. From the couch to sisters bed to your anywhere chair...if you can reach it, it is fair game!!!

Archer- Happy 1st birthday sweet boy! Mommy loves you so very much, and I am so proud of the boy you are growing into. You are kind and sweet and patient, and so very loving. You are also really funny and happy. You are a great little brother to a very special sister, and I want you to always understand that, even though Daddy and I might have to spend a little more time or effort on Ava, we love you just as much and are just as proud of you!!! You are your own person, and Daddy and I will always love and support you no matter what you do in life- and I know you will do great things with your life! You are smart, sweet, handsome, and precious, and I am so blessed to be your mommy. I love you. We all love you!